Women are Underdiagnosed with Autism Spectrum Disorder

Stories of Change | Tags: , , , ,

Women on the Spectrum with Hilary Horrey

According to the Centers for Disease Control and Prevention (CDC), autism spectrum disorder (ASD) is a neurological and developmental disorder that affects how people interact, communicate and behave. One in 36 children are diagnosed with ASD every year, and there are about 5.4 million adults with ASD. Symptoms can be noticeable in babies as young as 12 months. Signs and symptoms in adults include differences in social and communications skills like avoiding eye contact, having a hard time understanding others’ emotions, anxiety in social settings, taking things very literally and seeming rude, blunt or uninterested without meaning to. Get a more detailed list of symptoms here. 

When you think of autism spectrum disorder, you might picture the autism awareness bumper sticker, with the brightly colored puzzle pieces, on the back windshield of a minivan or the television show “The Good Doctor,” which follows a young medical practitioner with ASD. Usually, people have an idea of what autism looks like that comes from a close family member or how the disorder is depicted on TV. And because men are usually portrayed as the face of autism, you probably won’t see how ASD and the lack of ASD diagnoses affect women.  

In this article, you will learn more about how women are underdiagnosed with autism spectrum disorder, hear from Hilary Horrey, a member of OPTIONS class 21 whom we interviewed for Autism Awareness Month and get to know more about available autism resources. 

The Data Speaks Volumes 

ASD is typically diagnosed in early childhood between ages 1- 4, and according to the CDC, it is reported four times more in boys than girls. But this ratio may be inaccurate. A study published in the National Library of Medicine found that the male-to-female ratio of ASD occurrences was 3:1. That means 10 percent of girls remain undiagnosed with ASD at age 18. The reason for the lack of proper diagnosis is bias during testing. Researchers are beginning to realize that higher-functioning girls are missed during the diagnostic process.   

Along with bias during diagnosis, women and girls are better at masking disordered behaviors. Masking is defined as suppressing certain behaviors that are soothing because others may find them weird or strange. It may look like forcing eye contact during conversation, preparing jokes or phrases ahead of time, mimicking “acceptable” social behavior and imitating gestures and expressions.   

Women often mask more than men because sexism in society demands that women conform and charges a higher penalty to women for appearing odd or different. Women with autism tend to speak quieter, copy behaviors of people who don’t have autism, appear to cope better in social settings and show fewer repetitive behaviors. These social and masking behaviors make women with autism appear like non-autistic women and girls, which is why their symptoms are attributed to other disorders.   

The National Autistic Society explains, “Because of stereotyped ideas about what autism looks like and who can be autistic, many autistic women and girls struggle to get a diagnosis, receive a diagnosis late in life or are misdiagnosed with conditions other than autism.” An article from the Child Mind Institute states that many young girls and women with autism are often misdiagnosed with ADHD when they meet the criteria for ASD. ADHD is only one of the disorders that may be confused with ASD.   

Bias, misdiagnosis and unconscious masking create a complex and intimidating environment for adult women who believe they may have ASD. To give life to the statement “Women and girls are underdiagnosed with autism spectrum disorder”, we spoke with Hilary Horrey, a class member of OPTIONS 21 who was not diagnosed with ASD until she was 33. 

Get to Know Hilary Horrey 

Hilary Horrey is a communications operations manager at AES Indiana. Hilary grew up in Northern Indiana but found a home in Bloomington when she attended Indiana University, where she received bachelor’s degrees in communications and Spanish. Eventually, she and her spouse moved to Indianapolis for career opportunities. Since being in Indianapolis, Hilary’s career has continued to thrive, and she has played multiple roles, from being the forward-facing part of a company to serving in a more logistical capacity. In her own words, she loves to “be in roles where she can puzzle piece things together.”   

Life is not all about work for Hilary; she and her spouse dote on a couple of furry friends she loves very much; Knox is her 18-year-old Tabby, Odin is an 11-year-old Border Collie mix, Albus is an eight-year-old cattle dog with blue eyes. Each of them she rescued from animal shelters, and she is very passionate about not only her animals but all animals; Hilary spent time as the president and board member of the Monroe County Humane Association. In addition to being an advocate for animals, she is also a passionate feminist.  

Each of these interesting and unique things makes Hilary who she is, but an addition to her identity came as a surprise to her during the COVID-19 lockdown.   

The Impact of Alone Time  

Hilary always felt there was something different about her. Spending time in COVID-19 lockdown gave her a deeper perspective on those differences. During that time, she found a peace she had never experienced because she could exist freely without feeling constant pressure to hide or “mask” her instinctive behaviors; she didn’t need to work to make eye contact or imitate other people’s facial expressions.  

While alone time allowed her to unmask, it also affected Hilary in other ways. She describes struggling with executive functioning, which evolves skills such as self-control and emotional regulation. “I recognized I needed to talk to a doctor because of the simple things I couldn’t do anymore,” she said. “I couldn’t get up and out of bed, which was making work more difficult.” Hilary was also experiencing sensory sensitivity and social difficulties. Hilary was not the only one to notice the difference during the lockdown. Her husband and best friend, who were in quarantine with her, recognized her struggle. (If some of these terms related to autism are new, learn more about the ten key signs of autism in women.)  

Social media was what began opening Hilary’s eyes to what she was experiencing. Because she related to the videos and posts from women with diagnosed ASD that she was seeing, Hilary used multiple self-diagnostic tests to determine if she might be neurodivergent. All of the data she recorded about herself pointed in one direction, “there was nothing that came back in those tests that felt incorrect, absolutely nothing.” After researching her symptoms, she decided to consult a medical professional. 

The Autism Diagnostic Process 

Hilary expressed that her diagnostic process was not unlike that of other adult women. Many times, women need to advocate for themselves about the symptoms they are experiencing, especially when it comes to mental health. Some medical professionals will not even proceed with a simple test if they do not feel a patient fits the criteria. Hilary came to her appointment ready with all the self-diagnostic information, knowledge about ASD and past experiences. With all this information in hand, Hilary advocated for herself and asked her doctor to administer a test in a straightforward manner. Hilary’s research and self-analysis paid off, and after administering the test, the doctor agreed that she presented signs and symptoms of ADHD and autism spectrum disorder.   

Hilary noted that after her appointment, she made three calls: her husband, her best friend, and finally her boss. “I trusted her, and I needed her to know that I was going to be going through some things.” In Hilary’s experience, she found that once her ADHD was medicated, some of her ASD symptoms became more apparent, such as she was more direct than normal, she stopped attending events that gave her anxiety and her actions felt more reflective of her internal mental state. She began to feel much more confident, “once I stopped trying to be the perfect lady, that’s when I realized I had been masking my entire life. Now I am being myself.”   

Resources for Adults with Neurodiversity 

Two essential parts of Hilary’s journey to learning she has ASD and ADHD were resources and a support system. Through tools like the DSM 5, online checklists and free tests, she could get a clear picture of what she was experiencing. If you are considering getting tested by a doctor or would like to share resources with someone else, consider these options:  

In addition to resources that aided Hilary before she was formally diagnosed, there were a couple of resources she found beneficial after her diagnosis. There are multiple helpful resources, and it is vital to know your rights as an individual with ASD. IUPUI has compiled a fantastic list of useful links about federal and state legislation regarding people with disabilities and ASD. As an adult with ASD, having information about workplace accommodations is also helpful. Hilary, for example, worked closely with her boss to ensure her work processes and environment were conducive to her.   

One of the best resources Hilary could give anyone “is knowing your worth and what you are entitled to. You are legally entitled to certain things because your brain works differently than others.”   

Leave A Comment